Haemochromatosis Australia is a non-profit registered charity run entirely by volunteers. We are the support and advocacy group for people affected by haemochromatosis, their families and loved ones. We aim to provide support for people with the disorder and to increase awareness of haemochromatosis in the general public and the medical and health professions.  We have been operating for over 20 years and continue to grow and expand our activities. We are a registered charity with the Australian Charities and Not for Profit Commission (ABN 79 827 140 617). We have been endorsed as a Deductible Gift Recipient by the Australian Taxation Office. Gifts of $2 or more are tax deductible in Australia.

Our Vision

No Australian will suffer harm from haemochromatosis.

Our Mission

As the primary advocacy group for Australians affected by haemochromatosis we will provide support and promote awareness, early diagnosis and research.

Our Values

We believe that people with haemochromatosis are entitled to

• The same quality of life and life expectancy as other Australians
• Diagnosis before symptoms occur
• Well informed health and medical services
• Easy access to the knowledge, support and services they need.

Our Objectives

1. Support people with haemochromatosis

We will provide support and up to date information to people with haemochromatosis and their families to assist them to manage their condition. We will provide opportunities to meet other individuals and families experiencing haemochromatosis.

2. Community Awareness

We will promote awareness in the community about haemochromatosis.

3. Professional awareness

We will raise awareness in medical health professionals in order to improve the rate of early diagnosis and treatment.

4. Health Policy Improvement

We will influence and advocate appropriate health policy relating to haemochromatosis.

5. Research

We will support, encourage and maintain a high interest in research that will contribute towards our vision.

5. Administration and governance

We will operate efficiently and with high ethical standards while growing our membership and influence.

Strategic Plan 2015 – 2020

Haemochromatosis Australia’s Strategic Plan was developed to guide the activities of the organisation. it is reviewed periodically, with the next review due in August 2018.  The management committee welcomes member feedback on the plan and your suggestions for future reviews. The plan for the 2015-2020  period can be downloaded here.

Annual General Meeting and Financial Statements

The Annual General Meeting of Haemochromatosis Australia was held on Saturday 26 September 2020 at 2.30 pm. The event was conducted online only using Zoom.

Download minutes of the AGM 26 September 2020.

Download the audited financial statements for the year ended 30 June 2020 here.

Joining Haemochromatosis Australia

By joining Haemochromatosis Australia you will join others with haemochromatosis helping us carry on our vital work. We will send you our Members’ Information Kit with a copy of our booklet Haemochromatosis Your Questions Answered, a Venesection Record Book and other information resources. Each quarter we will email or post to you our quarterly newsletter with helpful information and news about our members and activities.  Knowledge is vital to managing your condition.  It helps you understand the disorder and empowers you to talk with your doctor. Discovering you or a loved one has a strange and potentially dangerous genetic disorder can be confronting – even frightening.  It is OK to feel some anger, pain, even grief.  We are there to provide support and advice. Where possible we will organise local meetings and information sessions where you can meet others in the same position and share experiences and support. By joining us, you will also be helping us raise awareness of this condition and improve early diagnosis and treatment. Joining Haemochromatosis Australia costs $40 per year ($25 for concession card holders).  Our group relies on membership subscriptions and donations to maintain our services and work towards our Vision.

You can join Haemochromatosis Australia online here, or download, print and post this form or call our INFO LINE 1300 019 028 during business hours to join using a credit card over the phone.,

You can make a tax-deductible gift to Haemochromatosis Australia  to help us carry out our volunteer work online here, or download, print and post this form or or call our INFO LINE 1300 019 028 during business hours to donate using a credit card over the phone.

Our Management Committee

Dianne Prince DBA MEd BA, President

Di became a Volunteer Advocate in September 2014 and was elected president in August 2016, bringing public and private sector management experience from the fields of education and business. Before retiring she worked for 20 years in the pharmaceutical industry in operations and supply chain management. Di was recently awarded a DBA for her research on Health Consumer Organisations. Di lives in Bundeena, a small community on the edge of the Royal National Park south of Sydney.

Matthew Howie, Vice-President

Matthew Howie

Diagnosed in 2007, as a result of arthritis of the hands, Matthew joined Haemochromatosis Australia in 2008. He has been a volunteer advocate in Adelaide since 2014 after attending the Melbourne Conference and subsequently a committee member since 2018. Matthew is recently retired. Previous employment has included middle-level management in several Commonwealth Departments in SA and NT and more recently as a Family Mediator and Relationship Educator at Centacare in Adelaide. Matthew is also a Life Member of the Unley Apex Club.

David Moorhead BBus, Treasurer

David Moorhead

David is a self-employed accountant with more than thirty years experience. He joined the committee in 2019. David lives on Magnetic Island, North Queensland. David is also Treasurer of a local environmental group.

Tony Moorhead, Secretary

Tony was appointed Secretary in 2010. He is a retired federal public servant with extensive experience in project management, marketing and communication, business analysis and organisation development. Tony is president of the Currimundi Catchment Care Group and a volunteer adult literacy tutor with Sunshine Coast Council literacy program. He lives in Currimundi, Queensland.

Dan Johnstone PhD, Committee member

Doctor Daniel Johnstone PhD

Dan is a medical research scientist based at the University of Sydney. Dan’s PhD research focussed on iron overload, specifically the effects of haemochromatosis on molecular systems in the brain. He continues to work on research projects relating to haemochromatosis and the central nervous system (brain and retina) with collaborators in Newcastle, Western Australia and Brisbane. Dan joined the management committee at the 2013 AGM.

Elizabeth McCray BBus (Mgt), Committee member

Image of Elizabeth McCray face and shoulders face on

Elizabeth joined the management committee of Haemochromatosis Australia at the 2017 AGM. Elizabeth was a volunteer advocate previously and assisted with publication of newsletters and the annual report. She has worked for various national and state based organisations in both administration and publications. Elizabeth currently lives in Brisbane having previously resided in Darwin and Newcastle.

Wendy Richards RN, Committee member

Wendy is a retired Registered Nurse with experience in public and private hospitals and aged care. She joined Haemochromatosis Australia soon after being diagnosed in December 2017 and has been a Volunteer Advocate since 2019. She is also a volunteer at events run by her local Council Community Centre. Wendy is our forst committee member from Western Australia and lives in Perth.

Jayne Hunt MA (Hons), Committee

Jayne Hunt

Jayne is originally from the UK and was diagnosed with Haemochromatosis in 2014. She has worked for the UK’s Department for International Trade and is now an Export Consultant for the food and drink sector. She worked on awareness and fundraising campaigns for Hemochromatosis in the UK before moving to Melbourne in 2017. She joined the management committee in August 2019.

Our Patrons

Margaret Rankin AM RN GradDipHthSc, Patron

Margaret Rankin AM

Marg was appointed Patron in 2010. She was our founding president and retained that office for over 20 years until she stepped down in 2010. Marg remained an active member of the management committee until the 2013 AGM..  She is highly respected in haemochromatosis matters in Australia and overseas.  Her contribution to haemochromatosis support was recognised with a Member of the Order of Australia (AM) medal in 2005.  Marg also has extensive volunteering history with other not for profit groups, especially the RSPCA. Marg lives in Brisbane, Queensland.

Professor Emeritus Lawrie Powell AC

Professor Lawrie Powell image

Professor Powell is Emeritus Professor, UQ Centre for Clinical Research, The University of Queensland, Brisbane, Australia. Lawrie is a leading authority on liver disease and haemochromatosis. He is a medical advisor to Haemochromatosis Australia. Lawrie has been of immense support to Haemochromatosis Australia since it’s very early days.

GP Liaison Officer

Dr Katie Goot, MBBS BSc FACRRM

Doctor Katie Goot

Katie is a rural GP based in Central Queensland. Katie became our volunteer GP Liaison Officer in 2011 before joining the management committee from 2013 – 2016. Katie helped develop the GP resources page for our website, developed an online training module for GPs and health professionals and has presented her research on HFE gene tests results in Queensland  2001 – 2011 at two medical conferences and a 2012 Queensland Institute of Medical Research Haemochromatosis Seminar.

Medical and Scientific Advisors

We have a panel of eminent researchers in the field of haemochromatosis to provide guidance and advice.

Professor Lawrie Powell AC

Emeritus Professor, UQ Centre for Clinical Research, The University of Queensland, Brisbane, QLD

Professor John Olynyk

Head of Department of Gastroenterology and Hepatology, Fiona Stanley Hospital, Fremantle WA

Professor Martin Delatycki

Director of Clinical Genetics, Austin Health, Director, Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute.Melbourne VIC

Professor Darrell Crawford

Head and Mayne Professor, Discipline of Medicine, University of Queensland, Brisbane QLD

Professor Greg Anderson

Coordinator, Chronic Disorders Program, Head, Iron Metabolism Laboratory, QIMR Berghofer Medical Research Institute, Brisbane Qld.

Dr Katie Goot

Haemochromatosis Australia volunteer GP Liaison Officer and medical advisor.

Contact Us

Visit the Contact Us page.